Oh… Hi. It’s been a while.

It’s been a long time since I’ve updated this blog… talk about stagnant. Suffering Sux must be what pops up when you Google the word “stagnant”.

As most of you know, we returned from our epic journey to the Mayo Clinic in Minnesota around the first of June. Unfortunately, this medical visit didn’t really provide the additional insight that we had hoped for, but we did manage to rule out many of the recognized serious and degenerative neuromuscular diseases.

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Ventura Beach

The only result that came back as a new positive was something called an Anti-Ro/SSA test. And this test, in conjunction with other past positives, once again strongly plants me in the rheumatology camp (as opposed to neurology).

We did meet with a really wonderful Mayo Rheumatologist, and he was not in the least bit surprised with the lack of clear laboratory findings in my case. The very fact that I landed at Mayo indicates that I’m a statistical outlier that does not fit neatly into the classic Rheumy box. He continued by saying that much of his practice involves many mysterious presentations that require a lot of creative doctoring. I got the impression that he enjoyed the challenge of the mystery. But, unraveling a case like mine would take quite some time, and we’d have to make a move to Minnesota to benefit from his medical expertise. So, unfortunately, we didn’t really make any headway with regard to diagnostics and treatment. Too bad.

The Mayo rehab experience, however, was extremely beneficial and the staff was very skilled, efficient and kind. The program was extremely effective at teaching me how to recruit the muscle groups that are still functional to compensate for loss of function in other areas. And I was a lot stronger and much more independent after my ten-day stint in rehab.

But probably the greatest gift that the trip to Rochester, Minnesota gave us was that we were able to confirm our long-standing theory that the L.A. environment was making a negative impact upon my overall health situation. Over the years, we’ve taken several short camping trips outside of L.A., and during each trip we noticed a slight general improvement in my health, and a return to my prior state upon our return. Going on an extended trip, like this latest one, gave us a real opportunity to test this theory. And sure enough after about a four-week stay in Rochester, MN, we noticed a great increase in my energy and strength, and upon returning to L.A., I began to slip back into my previous health situation. Even Liz’s father noted the difference and emphatically stated that it was absolutely essential that I move from L.A. into a cleaner and healthier environment.

So, when we got back to L.A., we just packed up our stuff and made a temporary move to Palo Alto to stay with Liz’s grandmother for about a month and a half. I didn’t meet with the same level of improvement as I did in Rochester, Minnesota, but I did fair significantly better than I did in L.A. So, we knew that we had to seek out greener and cleaner pastures. So from Palo Alto we moved down to Ojai to stay with Liz’s step mom, which is where we are now. Within about two weeks I began to meet with additional gains of strength and energy, so we’ve decided to make it our utmost priority to make a permanent move into the cleaner air of the Ojai or Ventura area.

The move is not a complete cure, but it will lesson the burden on my already overtaxed immune system. This welcome added strength coupled with ongoing IVIG infusions every ten days has worked to keep me stable and out of the hospital. I still have to lie down most of the time due to continued torso and neck weakness and back pain, but now I can actually sit up in my wheelchair for about three to four hours per day, and my breathing and swallowing function are greatly improved as well. This is obviously far from perfect, but at least it’s a big move in the right direction, which has really helped to uplift both Liz and my spirits.

The next big step is selling our house, and then we can start looking to buy our new permanent home in the Ojai or possibly Ventura area. Currently, my fabulous cousin Chris, and other extremely generous friends and family are helping to get our house ready for sale. Huge thanks to all of you earth angels, because we just would not be able to handle the additional burden of rehabing the house for sale at this time.

Until then, however, we do have to find a temporary place of our own, because Liz’s step mom’s (who has been so giving with her space) place is way too small to house all of us for the longer term. So finding new diggs is atop our lengthy to-do list.

Thanks again to all for your generous support that helped make the trip to Mayo Clinic possible. Without having had this extended time outside of L.A., we would have never known just how detrimental the L.A. environment was to my health.

So… this somewhat abbreviated report pretty much catches ya’ll up to speed in this ongoing saga. Hopefully we’ll be a little more settled in the near future, with regards to housing, so that I can keep the updates flowing on a more frequent basis.

 

 

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Comments
4 Responses to “Oh… Hi. It’s been a while.”
  1. Ramona says:

    glad you’re taking steps so you can feel better – sorry it’s not any easier… my thoughts are with you.

  2. James O'Toole says:

    Shay,

    It’s very interesting, and not surprising that L.A.’s environment is not conducive to healing, and overall good health. It sounds like getting out of Dodge, while difficult, is the right path for you and Liz.

    I hope for continued improvement for you wherever you land. Great to hear how you’re doing.

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